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Wildly wondering about life

Non-verbal and loving it!

Sorry I haven’t posted for a while, there will be an update soon, but I want to be in right now right now. Claire and I had a marvelous day. It was not a perfect day, or an easy day, but we relished each moment of it. Today we got to go see a doctor at Lucile Packard Children’s Hospital and we didn’t need to leave until 9:15, a full hour later than normal. Of coarse Claire woke up an hour early as she just couldn’t wait to get to the happiest place on earth (please hear the gentle sarcasm). I had hoped that we could sleep in, but it turned out to be such a blessing. We took the morning slow and deeply enjoyed it. We took the time to play with the Tango and it’s “morning”ezset. We listened to Dr. Seuss on audio book. Eventually we were ready and off to our 55 minute drive to LPCH to meet a new doctor. The doctor came in and apologized for having to ask so many questions, but they were not able to locate Claire’s chart so they were going off a few notes. I explained a bit about where we are and where we had been. The doctor then asked, so what can I do for you, why are you hear? The appointment had been scheduled to follow up after Claire started school. The process has been long and painful and I don’t know if we are even heading for the right goal. I was there for her to weigh in. I got the speech about how hard it is to tell with a child with these types of limitations, I already knew that. So after she told me that she couldn’t believe how many resources we were using ( I guess I am doing things right???) she asked if some residents could come in to see Claire. This is the kind of thing that they normally only get to read about, so I am always happy for them to meet Claire and see what a real girl with Rett Syndrome looks like. I just love how ornery Claire got at the clinic, she can totally tell when people don’t get her. There is no performing for these people, none! After two hours in the little room, we were free to go, and Claire was thrilled. It amazes me how well Claire reads body language, I suppose it is how she best communicates, so it is what she understands. She can pick up the slightest bit of doubt. I wish that I could learn to be quiet like her and to absorb as much as she does. I am always so busy participating in or try to alter the scene that I am in. Next we were off to food, and there was a Panera Bread, a treat for us! As I rolled Claire in she had the sweetest smile on her face, a little worn out from the circus that we had just come from, yet so content and softly full of joy. She and I don’t often go out for lunch the two of us, we have a few times in the last month and I think we will be doing it more often. As we sat there and she enjoyed her fresh fruit and grilled cheese I became overwhelmed. Without words, she says so much, the joy she expressed through her giggles when given a grape and the smile that radiated from her as she enjoyed her sandwich. We didn’t talk much. I finally felt comfortable communicating with her on her level. I am always trying to talk with her and expose her to speech and make her feel included. It was when I stopped and slowed down to her level that the moment became some rich I almost lost it. The emotion that I felt was amazing. I felt as if these were the last minutes that we had together, we hadn’t wasted them. After lunch it was time for us to head up to the city, we planned to see my cousin Zach who was in town for his work. To get there we first had to run through the rain to get to the truck . Claire giggled the whole way and she was wet by the time I got her in her car seat, lucky for us, by the time we made it to San Fransisco, it was all dry. As we wove our way to our destination, it was great to see her stare out her window and take in all the different buildings, very different from Santa Cruz, that is for sure. We had a really nice time with Zach, Claire enjoyed the sights and all the people that were around to see. We talked for a while and she was often the focus of the conversation. Like any good three year old, she did eventually begin to melt. Her screams of tired were cute, she had had it, done. With that we decided to go and let him get back to work. Here is the greatest part, the whole time we had chatted, she seemed content and involved. When we got on the car, she was glowing! I thanked her for her patience while the grown ups talked and asked her if she enjoyed being in the city. She radiated a smile for the next 35 minutes (I had been sure she was a minute from sleep). I love how active she is without using words. She teaches me so much. Even though she couldn’t say witty things and run around playing, she had a great time. There is so much that I can learn from this. The irony, my three year who has wisdom that is so great, yet the common perception is that she is functioning cognitively at a 6 month old level. Makes me so thankful that God gave me this gift on this packaging, I can only imagine how long it would take me to figure this out without her.